What are the views of adults with an intellectual disability (AWID), carers and healthcare professionals on a community falls management programme for AWID: a qualitative interview study in the UK

Background

Falls can have a significant impact on the lives of adults with an intellectual disability (AWID)1 2 and lead to reduced independence, reduced activity and an increased burden on carers. The rate of falls and injuries in AWID is high3 with significant associated personal and health and social care implications. Falls management research has primarily focused on the general older population often excluding AWID.4

Fall prevention strategies that are specific to AWID need to be different to those for the general older adult population5 as AWID have specific reasons why they might fall such as side effects from medications and alerted gait patterns. There are also differences in the support networks and clinical services working with AWID6 and tailored strategies to manage falls risks are needed.7

The ACTiON FALLS programme is a systematic falls management intervention that was coproduced by clinicians, researchers, public, voluntary and social care organisations and has been shown to be of benefit for older people.8 This intervention is useful, as it has been developed for a population of older people who are at higher risk of falling. However, this programme has not specifically been developed or evaluated to support AWID. The differences in risk factors for falling, patterns of falls, ways of delivering the actions to reduce risks and community settings where people with an intellectual disability are supported, require the development of a revised version of the ACTiON FALLS programme.3 5 9 10 The prevention and screening of falls risks in AWID are more likely to be supported by services and clinicians with no specialist knowledge of falls. If AWID are supported within specialist falls services, clinicians in these services are often responsible for the care of older people rather than for AWID. It is therefore important that clinicians and carers across services are supported with an appropriate tool designed specifically to meet the needs of AWID rather than being expected to apply a general tool.

A programme of research is underway to adapt the ACTiON FALLS programme for AWID. Based on the Medical Research Council Framework for developing and evaluating complex interventions,11 the programme of work includes using existing published evidence, the views of stakeholders, a consensus process and a proof-of-concept study to adapt the ACTiON FALLS programme (process outlined in online supplemental file 1).

Supplemental material

The existing ACTiON FALLS programme, which supports older people was used to develop the first draft of the programme for AWID. It was tailored for AWID using an existing clinical assessment for AWID and what is known about their falls and falls risks from existing literature.5 For example, the importance of including the experience of carers was considered as well as specific risk factors such as epilepsy and risk perception. An extract of the draft programme is included in online supplemental file 2. This draft was used to provide the basis for gathering stakeholder views on the content, design and format of the programme. The programme will be referred to from this point as the ACTiON FALLS (learning disability) LD programme as learning disability was chosen based on feedback from lay collaborators at the start of the research programme.

There are two components to the draft ACTiON FALLS LD programme: component 1 was an easy read version asking AWID about previous falls, what is important to them and what worries them about falling. Component 2 is a detailed checklist aimed at carers and healthcare professionals (HCP) listing the factors that may increase the risk of a fall with suggested actions to reduce these risks.

The aim of this qualitative interview study was to guide the development of the ACTiON FALLS LD programme based on the views of AWID, carers of AWID and HCPs working with AWID in the community.

Methods

Design

The study design and conduct were developed in collaboration with patient and public partners including carers and AWID to meet individual needs and maximise inclusion. The protocol is presented in online supplemental file 3. The following approaches were used:

  • Individual face-to-face or virtual semistructured interviews with HCP and carers of AWID.

  • Individual face-to-to-face or virtual semistructured interviews with AWID with a member of their usual care team present.

  • A series of face-to-face group interviews with an established community group of AWID. The inclusion of a group interview approach has been chosen to maximise access and generate discussion in a familiar environment.

The individual and group interviews were carried out over multiple sessions to help develop a rapport with participants and allow them to feel able to express their views more freely.

Patient and public involvement

Two patient and public representatives attended the study management meetings as members of the research team and were involved in the research design, interpretation and dissemination of the findings. Strategies to support the inclusion of AWID were identified by a group of AWID, their group leaders and researchers working in this field. These strategies included undertaking the interviews over several visits, the use of an information video to explain the research study and the study being introduced by a person familiar to the potential participant.

On completion of data analysis, the results were discussed with the community group of AWID with the study findings summarised in a video.

Participants and setting

AWID living in a community setting as well as HCP and carers supporting AWID in a community setting were invited to take part. Community settings included sheltered living, supported living, AWID living at home with family carers or independently.

AWID were included if clinical service criteria applied (18 years and over living with an intellectual disability as characterised by significant cognitive impairment, significant impairment in adaptive functioning, with onset before the age of 18). Group members who identified as having an ID were included. This also included groups that supported adults with ID and autism. It is estimated that 32% of people with autism have an ID, with a further 24% having a borderline ID.12 To ensure an inclusive approach, diagnosis or type of intellectual disability was not required for participation. HCPs were defined as having a professional registration with a relevant professional body and experience of working in a community setting with AWID. HCPs were recruited from across the UK. Family and formal carers were included to capture the breadth of support systems for AWID and were recruited from across one geographical location in the UK. A carer was defined as a relative or friend providing face-to-face support on most days or a paid care staff or support worker working with AWID.

Recruitment

HCPs were recruited through professional networks and specialist interest groups such as the Chartered Society of Physiotherapy, the Royal College of Occupational Therapists and the Royal College of Nursing. Carers were recruited through community groups, residential facilities and supported living facilities as well as through an National Health Service (NHS) clinical intellectual disability service in one geographical location in the UK. AWID were recruited from an established community group and through an NHS clinical intellectual disability service in one geographical location in the UK. An overview of the recruitment process is outlined in online supplemental file 4.

Data collection

The draft ACTiON FALLS LD programme (extract outlined in the introduction and online supplemental file 2) was sent to participants prior to the interview to allow them to consider their views prior to the discussion.

Coauthor NL (female) working as a clinical researcher conducted all individual and group interviews. NL is a registered physiotherapist. Participants were made aware of NL’s professional background in introductory meetings to discuss the study.

HCPs and carer interviews were structured to explore the presentation, wording and format of the draft ACTiON FALLS LD programme as well as detail on the risk factors for falling and strategies for supporting AWID to manage falls. Interviews were managed to last no longer than 60 min. With consent, interviews were audiorecorded and transcribed verbatim.

For both individual and group interviews with AWID, the interview schedules were developed to include a range of approaches to support inclusion (online supplemental file 5). Case studies and scenarios were used to support discussion which included written, pictorial and verbal methods as well as AWID discussing their ideas in pairs then as a larger group to allow time to consider their thoughts. Views of AWID were captured during the interview using flipchart and field notes. Summary statements from these notes are presented for AWID rather than direct quote due to the nature of the data collection process.

Analysis commenced during data collection to allow the sample size for all groups (AWID, carers, HCP) to increase until data saturation was reached. For the purpose of this study, data saturation was achieved when no new subthemes could be developed.

Data analysis

Data (from the transcripts, field notes and flipchart summaries) were managed using Microsoft Excel and analysed using the principles of framework analysis.14 The AWID group members and individual were given the opportunity at each interview session to review their previous questions and answers and give further feedback. The framework method outlined by Gale et al14 was adapted to start with a predefined framework at the first draft of the ACTiON FALLS LD had been developed. The interviews, therefore, explored predefined topics and themes. The steps we undertook are outlined below:

  • Predefined framework developed: A predefined framework was developed based on the first draft of the ACTiON FALLS LD programme. This ensured that the framework was logically developed using expert views and the current literature. To allow for any views expressed through the interviews that did not fit with the predefined framework an additional code of ‘other’ was added to ensure this data was not missed. This framework could be adapted in the context of the data through the creation and removal of codes.

  • Transcription and familiarisation of the data: Transcription was undertaken by an external transcription company. The researcher (NL) read and re-read the transcripts, field notes and flipchart summaries to become immersed in the data.

  • Applying the analytical framework: Codes within the framework were applied to each transcript using an Excel spreadsheet. New codes were generated by the researcher when reading the transcripts. The completion of this stage was done by one author (NL). Sections of the data were summarised within the framework to allow for efficient management of a large amount of data. The application of the codes was discussed by two researchers (NL and KR).

  • Thematic charting: The columns in each code of the framework were summarised to present the key perspectives of each theme. Overlapping themes were combined to summarise the data. This stage was done in discussion with two researchers (KR and NL).

  • Interpretation: The researcher kept field notes and reflections throughout the data collection and analysis stage to facilitate emerging interpretation of the data. The study team discussed the summarised data to explore the interpretation. This revised the overall framework and thematic summaries.

A summary of the analysis process for theme 1 is presented in online supplemental file 6.

Discussion

Summary

This qualitative study aimed to explore experience and views from key stakeholders involved in falls management for adults with AWID. The interview study has explored how to adapt the ACTiON FALLS LD programme based on the views of 14 HCPs, 8 carers and 13 AWID. Framework analysis identified five key themes: programme components, programme design, programme approach, who would use the programme and programme delivery. The importance of a national standardised approach to falls management to ensure equity for AWID was identified, however, the programme also needed to be flexible to meet individual needs. Considerations of how the programme can be integrated into existing systems and processes as well as how it can encourage a proactive approach to falls management were identified. The importance of meaningfully including AWID in the completion and decision-making of their care was highlighted.

Participants reviewed the ACTiON FALLS LD programme to assess its relevance to AWID and identified areas where the programme needed to be adapted for AWID. These included developing two individual components that could work together or be used separately. One component aimed at AWID and carers to raise awareness of falls risks and support including the views and preferences of AWID and one component aimed at HCP to guide actions to reduce falls risk. The tool needs to be adapted to be flexible and acknowledge the differences in the perception of risks between AWID, carers and HCP. Anxiety and fear of falling should be included as a clear risk factor within the tool.

Strengths and limitations

The study had several strengths and limitations. The interview approach for AWID was developed in collaboration with AWID to maximise inclusivity and support meaningful participation. Group and individual interviews were offered and conducted over several visits to develop rapport and trust. A range of methods to support discussions (eg, case studies, drawing ideas) was used and was welcomed by participants. By using these approaches, the views expressed by AWID are more likely to be reflected through increased understanding and opportunities.

While efforts were made to recruit a range of HCP, not all HCP involved in the management of falls were included (eg, dietitians, general practitioners), which may have limited the views explored. The type of HCPs volunteering to take part (primarily physiotherapists and occupational therapists) may however reflect the primary professionals currently involved in falls management.

The definition of a carer was deliberately broad to reflect the range of services and organisations that support AWID in community setting. Although a range of carer views were explored, for example, family carers and carers working in social and education settings, this could have led to difficulty in adapting the programme to account for this range of views.

The researcher undertaking the interviews was a registered physiotherapist and the study team included physiotherapists and occupational therapists. Members of the study team with different backgrounds (physiotherapists, occupational therapists, psychologists) were involved in the development and evaluation of the original ACTiON FALLS programme.We acknowledge that the experience and professional expertise of the study team may have influenced the scope and focus of the interviews as well as the analysis and interpretation.

Wider context

Barriers to accessing appropriate and timely healthcare for AWID are well documented with AWID experiencing poorer health than the general population.15 This inequity in provision and support was recognised by the HCP and carers in this study emphasising the importance of providing equity in falls management for AWID. The need for a standardised, consistent approach to falls management that supports AWID in specialist and generic services was highlighted underlining the need for adapting the ACTiON FALLS LD programme. An action plan to build the right support for AWID was published by the UK Government in July 2022 detailing a commitment to keep AWID safe, provide personal care and support and promote inclusive decision-making.16 These principles are in line with the principles of the ACTiON FALLS LD programme in reducing and managing falls risks through a personalised approach with AWID at the centre of the decision-making. This was also supported by views of AWID who wanted to be involved in the programmes designed to support their care and to be more involved in decisions about themselves. The adaption of the ACTiON FALL programme has been underpinned by the inclusion of the views and preferences of AWID demonstrating a strength in this research in supporting inclusion from the start.

There were contrasting views of whether specialist clinical knowledge was needed to complete the programme. This might be due to differences in perceptions of required competencies between healthcare professions with more specialised clinicians regarding their particular skill set as essential for the programme. This assumption should be confirmed in further research.

Although many of the risk factors for falling are common across the general older population and AWID, the views expressed in this study have highlighted some areas, which are of particular concern to AWID. The differences in how risks are perceived between AWID, carers and HCP were discussed with the acknowledgement that risk perception is a subjective process. In previous qualitative research by Cahill et al,1 carers expressed their views that AWID may have decreased hazard awareness and therefore not identify or act on a potential falls risk. These differences in risk perception and hazard awareness may require a flexible and dynamic approach where the views of AWID and carers are regularly discussed and reviewed.

Environmental factors relating to falls risks were highlighted as important to consider within the programme and a recent scoping review of risk factors for falls for AWID reported falls were most likely within the home environment and often in bathrooms, toilets and bedrooms.17 Concerns were, however, expressed by some AWID about navigating obstacles in new environments and this could potentially lead to a reduced confidence in going out. The implications of not going out could include social isolation as well as reduced independence, mobility and the ability to carry out daily tasks. A recent cohort study by Choi et al18 identified dependency with activities of daily living to be a key predictor of falls for AWID suggesting that carers and professionals need to ‘closely monitor’ individuals who require this support. The balance of supporting activity while minimising risk is however a key challenge in all falls management to ensure independence is maximised.

There was a lack of agreement between the stakeholders in this study on the most appropriate terminology to use with the ACTiON FALLS LD programme. Intellectual disability is now the commonly used term across research19 with a suggestion this can reduce the confusion with the term learning difficulty, which refers more to conditions such as dyslexia.20 Further work is needed to explore the views of AWID and carers on the most appropriate terminology to use within the programme.

Research implications

Undertaking this qualitative study has identified barriers to inclusion in research for AWID using traditional research processes and methods. Easy read documentation is appropriate for some participants, however, it does not support all AWID with different needs. An increased awareness for researchers on the challenges faced by AWID as well as strategies to support inclusion is needed. In addition, further research is needed to explore creative approaches that support AWID to engage meaningfully in research and to ensure their inclusion is not tokenistic.

This study has identified areas where the ACTiON FALLS LD programme needs to be adapted for AWID which forms the next stage of this programme of research. This includes further developing the two components—one targeted at AWID and carers to raise awareness of falls risks and to capture the thoughts and preferences of AWID and one targeted at HCP where falls risk factors are assessed and actions taken. Consideration of how the two components can work together or be used separately was highlighted. Exploration of how to develop both components to be accessible in an electronic format was indicated.

Conclusion

This qualitative interview study has explored the views of AWID, HCP and carers to identify how to adapt the ACTiON FALLS LD programme for AWID. In adapting the programme, it is important to consider the impact of difference in risk perception, fear of falling and anxiety surrounding change for AWID. The programme needs to be accessible and support the inclusion of AWID in managing falls and ultimately fulfil the requirement to be a proactive and educational tool for all.

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